Saturday, February 28, 2009

My old friend Jon Brooks has written a short article about my experiences with Multiple Sclerosis, that's been published on Tonic.com. Jon's an extremely talented guy, so much so that he even managed to make me sound coherent.

The article has received a very nice response, and I expect Jon's talents to be much sought after by publishers, both virtual and brick-and-mortar, the world over.

Jon and I have been friends for about 28 years, and he's one of the few people that hate the New York Yankees as vehemently as I do. We are in complete agreement, the Yankees are the embodiment of evil on Earth, Beazelbub in pinstripes. Of course, this has nothing to do with the article, but I need to vent my hatred of the Yankees at least once a day...

Since I suffer from Multiple Sclerosis, I figure I should provide a brief primer on the disease.

I'd like this blog be more about my experiences with the disease, and the way it's changed my life and colored my perceptions and ideas, than about Multiple Sclerosis itself. And, of course, this will be THE place to find Wheelchair Kamikaze videos. I'll post information about significant developments in MS research, and also fill everybody in on my own history with the disease, but this won't be a repository of clinical information about all things MS.

Anyway, here's a brief rundown on the earthly paradise known as Multiple Sclerosis:

The first thing that you should know about MS is that having it sucks big fat hairy monkey balls. The biggest and hairiest you can imagine. Really, it does. Surprisingly, though, once the shock of learning you have it wears off, life goes on, albeit in a form that you never wanted or expected...

Multiple Sclerosis literally means "many scars", because the primary diagnostic manifestation of the disease is areas of scarring appearing in a patient's central nervous system (the brain and spine), which can be seen on MRI images.

The vast majority of MS patients (about 85%) suffer from RRMS, which means their disease is marked by distinct relapses and remissions. During the relapsing phase, their symptoms flare up, and they can become quite disabled. After a period of days or weeks or months, these relapses subside, and are followed by periods of remission, during which their symptoms subside significantly, and their level of disability can be dramatically reduced. Each relapse can leave behind residual problems, which accumulate during the course of their disease. This accumulated disability can leave many long-term RRMS patients significantly impacted by their MS.

After a duration of years (typically 10 to 15) a high percentage of RRMS patients progress to the SPMS stage of the disease, in which they no longer suffer relapses and remissions, but their symptoms instead progress steadily over time. Instead of hills and valleys, think a gradual slope downwards.

About 10% of MS patients, myself included, are classified as PPMS. These patients never go through the RRMS stage of the disease, and therefore never experience relapses and remissions. Instead, their disease is progressive from the outset, and they ride the downward slope of disability progression for the duration. In general, PPMS is considered a more severe form of the disease, as patients accumulate disability much faster then RRMS patients.

PPMS differs significantly from RRMS/SPMS, so much so that many researchers think it may be an entirely different disease. While RRMS strikes women in much higher numbers than men, PPMS strikes men and women in equal numbers. Without getting too technical, the test results exhibited by PPMS and RRMS patients are often starkly different. Additionally, none of the treatments available for RRMS have any effect on PPMS. It is currently considered untreatable by mainstream MS physicians.

PRMS is the rarest form of the disease, and strikes about 5% of the MS population. It is marked by the steady progression of disability along with periods of relapse, when symptoms temporarily grow more severe. Like PPMS, PRMS is often more aggressive than RRMS.

Current treatments for MS (almost all directed at RRMS) all seek to either modulate or suppress the immune system, because it is thought that MS is an autoimmune disease, meaning that a patient's own immune system has gone awry and is attacking their own cells. While this hypothesis is widely accepted, it has never been proven, and the cause of MS is still a great mystery.

Being a hyper opinionated New Yorker, I have lots of takes on all of this, which I'll expound upon in future posts.

Friday, February 27, 2009

After much reluctance, I've finally decided to become a member of the blogosphere. It's taken me quite some time to work up to this, because I just don't see myself as a "blog" kind of guy. It's not so much the actual act of blogging that I object to, since blogging is really nothing more than a very public and self-aggrandizing way of keeping a diary, but I have some kind of aversion to the total embrace of technology and "social networking" that becoming a blogger represents. Maybe my aversion is to the very sound of the word "blogger", which sounds like a mash between "clog" and "bugger", and all the uncomfortable mental images that gives rise to.

Anyway, by way of introduction, I'm a 45-year-old married man living in New York City, who was diagnosed with Primary Progressive Multiple Sclerosis in March of 2003. In the almost 6 years since my diagnosis, my condition has deteriorated to the point that I now need a power wheelchair to travel any kind of distance, though I am still able to stumble around the apartment with the help of a cane. I'll use this space to pontificate about life with a chronic illness, to post news regarding my disease and developments in multiple sclerosis research and treatment, and to comment on current events and the flotsam and jetsam of existence.

I'll also post videos and photos I take with my "wheelchair cam", which is basically a camera mounted to the arm of my wheelchair using a flexible tripod. Before reluctantly quitting due to my increasing disability, I had a career in the television/video industry, and was an avid amateur photographer. Multiple Sclerosis forced me to put aside these interests for about 5 1/2 years, because of my physical limitations, but since I got the wheelchair I've been able to start shooting once again. I posted my initial "Wheelchair Kamikaze" video to YouTube about two weeks ago, and the enthusiastic response it generated went a long way towards nudging me into starting this blog. Today a blog, tomorrow a "best short documentary" 0scar. I'd better start saving up for a tuxedo...

So, without further adiue, here's the first Wheelchair Kamikaze video, a trip through the Upper West side of Manhattan that my wife Karen and I took while on our way to get some bagels. When I was an infant, I had a beagle named Bagel, but that's an entirely different story...

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...